leadmeastray88

The fatigue was terrible for me. No matter how much sleep I got, I'd wake up feeling like I hadn't slept a wink. Then I'd go to school or work and barely be able to keep my eyes open, and not able to concentrate at all. It really took a toll on me. I'd have to agree that I was so worried that I was suffering from a terminal illness as well, I was convinced I had cancer or something I was so worried.

By the way, it wouldn't have been the Reese's Pieces that got you...to the best of my knowledge they're gluten free, and I eat them quite often and haven't had a problem with them.

If you have extensive damage, it could take months and months on a strict gluten free diet to even start noticing a difference. I didn't start feeling like my old self again until I hit the 2 month mark.

Really, if it doesn't make a difference to you to have an official diagnosis then why not just go strictly gluten free for a few months and see what happens? There's nothing really to lose. Unless you need a diagnosis, then you need to be eating gluten right up until the testing is done for it to be accurate...even then, the testing is nowhere near as accurate and reliable as it should be...there's lots of false negatives.

I've noticed the past couple of days that I've had some 'stringy' looking things in my stool...sorry if TMI.

I just wanted to know if anyone thought it might be, and if I should get it checked out? Otherwise I have normal BMS.

Thanks in advance!

Hi there,

I would say Celiac is a definite possibility for you. However, to know for sure you need to be eating gluten and have the official testing done. I can see how that would be difficult for you because like me, you're a college student and don't have insurance. However, I would say that if you're serious about getting a diagnosis, it's worth the investment.

I had absolutely terrible acid reflux before I was diagnosed...that was my very first symptom. My doctor told me that it was coming from the stresss my body was enduring because of all of the hernia surgeries I had. So that makes sense for you too. I was put on prescription proton-pump inhibitors when I was 15 years old. Then after the acid reflux came my other symptoms - extreme fatigue/brain fog, stomach cramping, digestion issues, etc.

Does your college/university offer any student health insurance that's incorporated into your student fees? That's how mine is, it's mandatory unless you already have health coverage through your parents.

I would say it's a definite possibility for you, and needs investigating. Have you talked to a doctor about your options?

Is there any value to a concrete diagnosis? I am planning to go gluten-free no matter what, since I felt so much better, but I was wondering if a firm diagnosis of celiac would make a difference.

Also, leadmeastray, I noticed in your sig that you suffered from hyperhidrosis prior to going gluten-free. HH has been a huge problem for me all my life, and I would LOVE to see it go away! Did the gluten-free diet make a difference?

The value of a concrete diagnosis depends on the person. The most important thing is that you're going to stay loyal to the gluten-free diet. Lots of people can't/won't be faithful to the diet without a real diagnosis. But if you think you can stick to it without one, then definitely go for it!

Prior to going gluten-free, I had terrible hyperhidrosis. So badly that I would have to change shirts up to 3 times daily. My Celiac was triggered by the stress my body endured when I went through 9 hernia surgeries including one without anesthetic...very traumatic to say the least. So my body was stressed and that's what could have caused the hyperhidrosis. I don't know for sure that it was the gluten free diet that made it stop, but I know that my body is no longer under stress because I'm treating it properly and therefore the sweating stopped. I hope that helps!

I just bought a similar movie last week, it's called "Food Matters", you can watch the trailer here:

Open Original Shared Link

It talks about the correlation between the food we eat and chronic illness.

I can't wait to watch it. It's about time something as important as this starts getting circulated.

I had heard that the blood test is less effective if you have had celiac for a long time - is that true? I have had these symptoms for ages, so if I am a celiac, that would help to explain it.

I have never heard of that before, someone will correct me if I'm wrong, but I believe the testing is more prone to be correlated with the years of damage (more likely to be positive the longer you've had damage). However, the testing is far from where we'd like it to be, in terms of accuracy and reliability. We've had biopsy-diagnosed Celiacs here who had completely negative blood tests. So yes, it is definitely possible to have Celiac without the positive blood work.

In my honest opinion, you have the proof that the diet works for you. Unless you need an absolute diagnosis, I would say just to go for it!

Hi!

I don't know anything about the prep part because I've never had a colonoscopy before...however I think the 3 day liquid diet is a good idea, makes sense!

Crystal Light, to my most recent knowledge, is gluten free. It's a Kraft brand and they will clearly state ingredients so you should be okay with that...it IS yummy stuff!

Good luck with your scope!!

Thanks for your reply.

I know getting him to go is going to be like pulling teeth. I know I'll have some convincing to do and perhaps telling him what the complications would be of anything undiagnosed would work.

What I really wanted to know though is if it's possible to develop an intolerance to something simply by not eating it for awhile?

Just a quick question...

I've been noticing that my boyfriend has started having some kind of reaction...like frequent D, stomach aches, fatigue and whatnot.

He has been largely eating gluten-free because my house is completely gluten-free and his family is partially gluten-free because they do the "Eat Right For Your Blood Type" and 2 of them are O.

So, could he just be sensitive to gluten simply because he hasn't been eating a lot of it lately? Or do you think this is something he should look into as a possible intolerance?

I told him to go to the doc but he's completely doctor-phobic, and he says he'll only go once there's an "actual problem". He admires my health journey but for some reason doesn't seem to care about his own, and I'm concerned.

Any thoughts?

Thank you all for the replies

The cherry thing is interesting! Never heard of that one.

Maybe I'll try that and then melatonin...I've been taking yoga classes which has actually helped a lot.

I now know that I'm monosodium glutamte intolerance. After remembering recent history, and observing myself... monosodium glutamate really kicked in my symtoms. The lump on the back of my head seem to have swell, I got headaches in the area of the lump, felt drowsyness etc..... and notice all of this happen during a few hours later ( sometimes minutes) consuming monosodium glutamate. I also feel as if I'm celiac also ( blood test came back negative, though I had went on a two week diet before test... consuming wheat only 3 times for testing). My hairtexture seems to be improving etc.... my health seems to be getting better avoding monosodium glutamate and gluten. I know it's been said that many celiacs are msg intolerance also.... so it pushes me even more to the thought that I may be celiac. How should I go about knowing whether I'm msg and gluten intolerance, or just one? Ofcourse, I'm hoping it's just msg intolerance... though I think it's both.

I really don't know anything about MSG intolerance, and I don't know how severe the symptoms can be.

As far as I know, MSG is mostly gluten-free in the US and Canada, but I could be wrong. It could definitely be an additional intolerance you may have in addition to gluten intolerance.

To do an elimination diet, you need to eliminate 1 thing at a time so you know which is causing your problems. Why not just go MSG free at first for atleast a month, and see what happens. If you're still having problems, then go gluten free for a month. It's easier to pinpoint it this way, but you need to absolutely avoid it, which means no eating out and eating very simple foods, and eliminating any cross contamination issues.

Sorry it wasn't much help, but I hope you feel better soon

I have been diagnosed with IbS for many years, and recently began having symptoms of dairy and gluten intolerance. I'm much better now that I have eliminated them from my diet. I find the Entero Labs views of stool testing vs. blood testing very interesting. Are they really more accurate? And worth the money for a full panel - al most $400?

Hi there

If you look in Yellowlilax's thread on "Enterolab results" I answered your question there.

I'm knew to this forum - so don't know how to do this! ARe you saying that Enterolab is worth the $400? I'm interested in testing for dairy and gluten intolerance?

Hi there,

I would only recommend Enterolab testing if you've already had other testing done - for example:

1) The Celiac bloodwork panel, which includes:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

2) An endoscopy with biopsy

Reason being, Enterolab's testing methods have not yet been approved/acknowledged by the current medical community. They claim to be able to detect active dietary gluten sensitivity in the stool, but NOT diagnose Celiac Disease.

I think it's extremely important to know how you fare on the other tests first. Because the validity of the tests is sometimes questioned, you may second guess yourself later on and wonder if you actually have Celiac Disease, yet it's too late to test since you'll have tried the diet. It saves a lot of confusion and second guessing in the long run.

What I meant by my last comment was that Enterolab helped me, yes, but it was not the only thing that kept me strict on the diet. My doctor monitored my symptom improvement and B12 deficiency, and a couple family members were also diagnosed, so this gave me more and more assurance that I was doing the right thing. Had it only been for the Enterolab tests, I'm not sure it would have been enough for me. I had negative bloodwork and had no GIs who would give me an endoscopy, so I opted for Enterolab. But please know that you won't know if you have Celiac by taking these tests.

Good morning everyone,

So its been about a week since being on the wheat, gluten and soy free diet. Yesterday, I went to a healthfood market and I purchased a rosted veggie pie that was wheat, soy and gluten free. I asked the gentlemen if there were any other ingredients that I should know about and of course he said NO. Well, alittle while after eating the pie my stomach felt like hot burning acid and painful. I called the store and spoke the chef and of course he assured me that it wasn't the pie. He gave me a run down of the ingredients and at the end of the list he stated "black pepper as an ingredient". I was shocked. How could a healthfood store not know that black pepper is not good for the digestive system; red pepper is best!! this ingredient is a definite NO No especially for ME. My stomach is still chruning and burning and its sour but not as bad as yeasterday. Also, I am very tired and itching all over inclluding anal. Despite the above I am ok because it could be worse. Does anyone else experience the above symptoms or is it just me!! Please respond!

Pre-ground black pepper could have gluten in it, believe it or not, as a filler! I've found this with certain pre-ground peppers. I buy the pepper corns and put them in a grinder.

I'll start avoding msg, I did notice having symptoms with food containg msg, though this was mainly chips. Still in question on whether I celiac.

Have you spoken to your doctor since your last visit? If you're very concerned about your health I would definitely recommend revisiting the issue, and discuss further testing. The longer you wait, the more your health will deteriorate. If you're not getting anywhere with the doctor you have now you should maybe consider finding a new one. Your health is precious and is obviously affecting your quality of life. I hope you can get some decent help soon!

I only got the basic gluten sensitivity testing for $100. I am a paranoid, worrier! So thats why I got the test. I also am typically never sick - we eat very well - organically, no processed foods, etc. and actively work out, etc. I've had 4 months of alternating constipation and diarrhea that started randomly one day like flipping on a switch. I've been through a ridiculous amount of testing with no answers and came across info on celiac. So to me it was just ruling out another thing and moving on to figuring it out. Its very easy logic to know that most that test there have huge indicators, but I wanted to post for those that are worry warts like myself as well. And to those that doubt their testing.

Absolutely, that's what I was trying to say.

I should have clarified that people who buy Enterolab tests usually have symptoms and have ruled out other things, so the chance is higher that they'll have a positive result, whereas if everyone in the general population got tested there would be more negative tests.

Enterolab is great for that, I certainly found benefits from getting their tests, especially the genetic part of it. It gave me a reason to stay strict on the diet, which is the most important thing.

I was also a worrier, more so that nobody could figure out what was wrong with me, and I was desperate to find answers instead of getting IBS pills. Enterolab definitely helped me this way in the long run.

THanks for your response! My appointment with the gastro is June 18th. I was thinking I would go gluten free for a couple of days and see how I feel, and then after I have my appointment and I'm given a date for tests, I could resume eating gluten before the test. Would that work or would it still throw off the test? I would just like to get an idea of how my body reacts without gluten.

Unfortunately, I wouldn't recommend that. The villi in your intestines could heal very quickly and therefore your tests would be invalid. You may be surprised and get in very early, then you wouldn't have been eating enough gluten for the testing to be accurate.

Also, only a couple of days on the diet isn't necessarily long enough to notice a difference. It takes most people weeks, even months on the diet before they start showing improvement. So really, there isn't much of a point.

To be on the safe side, you should definitely continue to eat gluten normally. You don't want to be second-guessing yourself down the road, asking "would the tests have been positive if I had eaten gluten?"

Therefore it is only safe to start the diet once all testing is complete. I'm so sorry it is so painful for you, but it is really the best bet to have accurate results. I hope you get in very quickly!

Good luck and take care

Most definitely. Mine was triggered from the post-traumatic stress from a surgery that I endured without anesthetic.

Moreover, your mom has Celiac which makes it even more likely since it's hereditary.

The iron deficiency is common in Celiacs.

Have you had any testing done? This is the complete Celiac blood panel, you should take it in to your doctor. Don't start the diet until all testing is done though!:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Welcome!

I'm sure there will not be a genetic pre-screening before getting the vaccine either.

I'm sure you're right. Too much money

I think this is because by the time someone has researched to the level that they are willing or able to self-pay they are pretty certain they have it. It is kinda like a self-targeting survey. The people most likely to fill it out already have a predisposition because of the topic. So there would be a abnormal high number of people who test positive compared to the general population.

That is my belief too.

If you're willing to spend nearly $400 on getting tested, you probably have enough evidence of having a problem with gluten in the first place.

And we do know for a fact that there have been negative tests posted on here before - there's probably even more, but people move on to another thing once they learn gluten isn't a problem. And that doesn't include people who aren't a part of this forum.

How do they do a biopsy??

To biopsy, they do a procedure called an endoscopy - basically they insert a small tube down your throat with a little camera on it, they descend into your small intestine and take small biopsies through the tube.

Many people here have had this done and say it's a breeze - I know there's anesthetic/sedation options as well.

What does the inconclusive mean???

Not sure. To know, we'd have to see exactly what they tested. You can ask your doctor for a copy of the lab results and post them here so we can help.

It could mean that you were 'borderline positive', (which is still positive) but your doc didn't think that it means you have Celiac...

Again, we'd need to see the lab results

I would say it's worth it.

However, that one test is not enough. It's only one of many tests included in the complete Celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

It's better to get all of these tests together so they can see the big picture.

But you also know you have a problem with gluten because you had problems again as soon as you started eating it again - I think that's evidence of a gluten intolerance, not IBS...

If you feel better off of it, you should go completely gluten free and see if your other problems clear up - but only after you finish testing (if you wish to do so!)

Good luck!

You mentioned the dry eyes. Does anyone know if that is related to celiacs or gluten intolerance. I have very dry eyes. I was on restasis for a few years because I was hardly producing any tears but I went off of it because it wasn't helping all that much & I couldn't afford it.

Chronic dry eyes/mouth is a symptom of Sjogren's syndrome, have you ever been tested for that? It could be linked to Celiac because it is also an autoimmune disease:

Open Original Shared Link

This particular autoimmune illness features inflammation in certain glands of the body. Inflammation of the glands that produce tears (lacrimal glands) leads to decreased water production for tears and eye dryness. Inflammation of the glands that produce the saliva in the mouth (salivary glands, including the parotid glands) leads to dry mouth and dry lips.

Sjogren's syndrome with gland inflammation (resulting dry eyes and mouth, etc.) that is not associated with another connective tissue disease is referred to as primary Sjogren's syndrome. Sjogren's syndrome that is also associated with a connective tissue disease, such as rheumatoid arthritis, systemic lupus erythematosus, or scleroderma, is referred to as secondary Sjogren's syndrome.

Hi all what is the name of the place you all are saying for the genetic testing. I really want to do it and cannot find it...

Thanks all...... I need to rule celiac it or out....

Bonnie

Enterolab does it: www.enterolab.com

as well as Kimball Genetics: Open Original Shared Link

and I'm sure there's more.

You should also know that genetic testing can't necessarily rule in/out Celiac...some people here have official diagnosis and they don't have the "right" genes. Alternatively, if you do have the "right" genes, it doesn't mean that you have Celiac or that you will develop it...just that you're predisposed.

Have you had any other testing done? i.e. Bloodwork?